Guide For The Newly Diagnosed: The Answer

This is an idea that I have been mulling over for awhile now. Next month will be my 9 year anniversary (cue the circus music) of being diagnosed and I have learned an obscene amount about MS since then. A truly tantalizing ton from tomes, and a lewdly large lump of life lessons. Think of how many little nuggets that we have learned the all too often (very) hard way, and think of how many things we would have liked someone to tell us when we were newly diagnosed. So, because where I am at in my disease course is a total snoregasm (from Bob's Burgers, I wish I'd made that word up!), I'm going to share some things that I have learned during this long strange trip. 

THE ANSWER

My diagnosis came out of the blue. I fell down some icy steps, left leg went numb, double vision in left eye, go see doctor, usual tests, and within a matter of 2-3 days was told I had MS. My life was like a puzzle that I was orderly putting together, the way I wanted, the way I had planned. MS took that puzzle and threw all the pieces in the air, it even mixed a few other puzzles in with my original puzzle for extra wackiness. I was so shocked, lost, scattered, scared, confused, overwhelmed, every word that you can think of like that, I was, as I'm sure most of us are in the beginning. I went to the MS walks and support groups, I talked to as many people with MS as possible trying to find out how they were okay with having MS and I was a mess. I wanted to know their secret. I wanted to know why they cared more about what casseroles people had brought than the fact that they had MS and they are only going to become more disabled (I hesitated writing that. I don't want to scare anyone; after 9 years I just started using a cane full time.). I wanted to know the answer. And here it is. The answer is Time. That's it. On those days when everything is just too much, wipe everything off of your to do list and put on it "breathe in and out." That is what you are going to do, providing you don't have to take care of others. Sometimes I would just sit, stare out the window and breathe in and out, that was my task for the day because I was too overwhelmed to take on anything more. 

In time you will start to care more about what casseroles were brought as you come to terms with having MS. At first I used to wear my MS shirts all the time so people knew what was wrong with me, now I never wear them. Why give away the answer when it's so much more fun to let them wonder? I even tell them when they ask that the answer is not as interesting as what they are imagining, because it's not. And, something I truly never thought would happen, I have even been able to put together a few parts of those puzzles that MS scattered. It has not been easy, sweet Mother of God it has not been easy, and The Answer is not an overnight cure, so it needs to be taken with 2 heaping tablespoonfuls of patience and I have been out of that since birth. While I'm waiting I'm going to go see what casseroles everyone brought.  I hope one is that jello one with the pretzels and whip cream, I freaking LOVE that stuff!

Things I Have Learned From Courtney Stodden

I have enjoyed Courtney Stodden for quite some time now. It started with an interview where she writhed around on a couch like she was on the verge of a heaving orgasm. That might have been the end of it, but she was a very determined young woman who went to a pumpkin patch to reenact the Kama Sutra with her sugar daddy for all the kids to see. Unfortunately, all the women were too jealous of how much their husbands were liking it, complained that she was too "sexy", and she was tossed out of there. The problem is that ever since she broke up with Doug, she has become a predictable bore. It has gotten so bad and soooo predictable that now she and I are going to have to break up. I am working on my "Dear John" letter, but until I am finished, here are a few things I have learned from Courtney.

No matter how bad things are, I have never been a mustache for a Santa suit wearing Doug Hutchison. Even on my worst days, it is a comfort to know that Doug's beady eyes have never looked out at the world from between my legs. Especially during a photo shoot that I was trying REALLY hard to be sexy at. Nothing ruins sexy like trying to pull away from creepy grasping Santa who wants to wear you as a too tanned mustache. Knowing that I never have been and never will be Santa Doug's mustache, well, that is something to write home about right there, folks.

"Dear Mom and Dad, 

I got poison ivy on my butt from pooping in the woods but the camp counselor says I will be okay if I don't scratch it. It is really scratchy though!!! I got bit by a spider on my eye lid and it swelled so bad I couldn't see a thing and kept tripping over everything, I even fell in the shower and got a bar of soap stuck in my nose, now one nose hole is a LOT bigger than the other. But it's still not as bad as having Doug Hutchison's red beady eyes peering out of my crotch while he's dressed as Santa. HA HA HA!!!!

Love and kisses

BB"

Put words like "expressing yourself" and "not hurting anyone" together -- along with like statements--  and it will sound like you are deep and smart and stuff, regardless of whether you live by such high flown words yourself. For example, Courtney's recent response to whether she considered herself to be a feminist and her response of, and I'm paraphrasing here, "yes!!!!1!! to me it's dressing how you want, expressing yourself, as long as you are not hurting anyone and supporting other women!" And people acted like that should be Feminism 101. 

Alex: "We're going to start this round off with 'Knowledge So Common, Even Your Dog Knows It' for $100. 'Dressing and acting in such a blatantly sexual manner to attract as much male attention as possible regardless of theirs or your relationship status, even to the point of ostracizing other women.' Yes, Blindbeard."

Blindbeard: "What is Feminism." 

Alex: "Good job guessing the obvious."

And finally, for today, it's not for publicity/fame/attention as long as you can keep coming up with excuses to be noticed. Divorce is very painful, no question about that one. Even when it truly is mutual, it can throw you for a serious loop. My divorce was truly mutual; he bought me furniture when I moved out and even now if I needed help he would do it, even though sometimes we really hate each other, we do get along for the most part. Granted, I'm not a known "personality" so nobody was interested in my story, but I still don't think I would have tweeted 3 times about my exclusive-tell-all-what-went-wrong interview. There is something rather... gross? Distasteful? Insincere? Really inconsiderate to Doug? Publicity-seeking-seeming? Attention-whoring-feeling-giving? And to tweet about your new crush when your ex is choking up during his interview done on the same day isn't that a bit... rude? Cold? Selfish? Insensitive? And to release to the public a separation agreement that lays out the sleeping arrangements is so stupid and unnecessary and attention whoring it should make the person who did it writhe in embarrassment. But it is not for publicity! It is an important document that the public really needed to see, because how were you supposed to get any sleep not knowing how Doug and Courtney were handling their sleeping arrangements? I know I'm sleeping better because of it, and I'm going to go tweet that a few times to prove it.

Things I'm Tired Of

In order

1. Cluster Headaches

These are the worst thing I have ever experienced. Period. Period again. Bar none, NONE. They make MS look like a fun and lighthearted day in the park. I am so tired of being in the grip of them, of being scared of getting one while in public, of being a prisoner to them. I'm taking a new medicine now that has really helped bring down the severity of the attacks. I still get a few breakthroughs that bring me to my knees, but for the most part it is helping. God am I tired of clusters.

2. My Ex

That man is going to be the death of me. And if that is the case, I better be the death of him too. We get along for a little while, then he pisses me off. I stop talking to him. He leaves me alone for as long as he can stand it, then little by little he starts texting me again until I cool off enough to start responding to him. We talk for a little bit until he pisses me off again, and then I ignore him and we wash, rinse and repeat many, many, many times. He pissed me off early in the summer, we were talking by the time I went on vacation in August. I sent him a "glad you're not here!" post card, and I meant every word of it. Sometime in September he pissed me off and I have not responded to any of his texts since. He has tried every tactic to get me to respond and I have come close, but I'm not ready to put up with his smug jackass self that makes me regret ever talking to him in the first place. Yesterday he was desperate because he was "in full hunting mode and I knew what he needed. All seriousness. No B.S. Just give him what he needs and that's all." What he needed was me to text "big bucks no whammies." That's it. That is his superstition about hunting. If I don't say that to him (or text it, whichever the case may be) he won't get a big buck, he will get a whammy. And it has to be me. I used to say it whenever he was going hunting and he said that it brought him luck, now it's my curse. I told him that I am not talking to him again until hunting season next year, I'm not joking. Big bucks no whammies. 

3. Grocery Shopping/Being Mother Hubbard

I truly do not know which is worse because they both suck. I hate grocery shopping. I get so worn out from it and then don't get much else done the rest of the day. I make menus, I make a list, I buy fruits and vegetables, and try to keep a good selection of foods in my house, but many of those things get eaten fast or need to be eaten fast which then makes me Mother Hubbard again. I don't have a lot of junk food around so my cupboards really are bare. I need to throw away some old cereal boxes but, damn!, that will only make it look worse. I know it's good to not have a lot of junk food, but when you are really tired, a little junk food sounds so nice and quick and easy and... nice... mmmmmm....

4. Being Startled By The Sheriff At Your Door Looking For An Old Neighbor When You Look Ridiculous!

I'm working on some different projects around here so I'm wearing old clothes and a bandanna on on my head. I'm typing away when a sheriff knocks on my door officially startling me and horrifying me that I got caught looking like this! As soon as I hit "Publish" on this I'm heading upstairs to take a hot shower and put on pajamas. Instead of getting caught looking like a dumpy old housewife, I could have at least got caught looking like a clean dumpy old housewife. 

You know what I'm not tired of? Right now I'm enjoying a version of Swan Lake from the 60's. The technicolor! The hairstyles! It's like Swan Lake meets Charlie and the Chocolate Factory. It's so gaudy and bright and fabulously terrible that I can't tear my eyes away. I just wish I had some food to eat... maybe tomorrow I will go grocery shopping if I can't find anything else to do. 

Unforgivable

I'm a pretty forgiving person in general. I don't have too many things that are absolute deal breakers, there are a few, but not many, and even then with the right apologies etc. they can usually be worked out. This morning I ran into a total nonnegotiable. At 3 am almost to the minute, I was woken up by my cluster headache. This is the usual time so I just glance at my clock to make sure we are on schedule and to track the starting time so I know when to expect the end time, then play the waiting game. I recently started new meds so the severity of my attacks has really come down, so much so that I can play games as I wait out the 2 to 2.5 hours until the hot sledgehammer is done hitting me on the left side of my face/head. Sometimes, just to shake things up, instead of the hot sledgehammer to the side of my face, the cluster will take a pvc pipe and try to force it into my eye socket with the sledgehammer. It likes sledgehammers because they can really get some force behind them and they cause more widespread pain. But the cluster headache wasn't the problem, nor was the fire that was burning in my legs, thanks to my MS that wanted to remind me that it was still there in case I forgot, because when clusters are in town, I don't notice anything else. A pack of wild rabid possums could be gnawing off my leg and I wouldn't know it if I was having a cluster headache at the same time. But worst of all, stuck in my head was that Popo Zao (or however you spell it) song that Kevin Federline did. What in the name of tarnation was that song doing in my head, actually, just that one line, "let me see that popo zao." When was the last time you even thought of that song, or remembered that he did it? I can't remember the last time I thought about him, or the fact that he wanted to be a rapper and tried by making that one song that I think I listened to maybe twice on gossip sites years ago. I tried to think of every catchy song I could. Every song that when I think of it, it is stuck on repeat in my head for the rest of the day, all to no avail, even now that one line keeps popping up. I'm so ashamed. I'm ashamed that somewhere in a wrinkle of my brain, I stored a line of that song for years and it popped up to keep me company at 3 am along with my burning eye and legs. Why couldn't my MS attack that area of my brain? It's probably too busy destroying all my happy childhood memories to worry about silly things like useless snippets of obscure songs. It's unforgivable. 

I'm bored stiff with MS, literally and figuratively, so I am going to start writing about other subjects that are of interest to me or going on in my little world. I just wanted to give the heads up so no one is surprised if they come to a MS blog and read about how my dog threw up under my bed, ate it, threw up again, and then I threw up. These are things that are so exciting that I could not possibly keep them to myself. Now I got to go get into the shower because if I get into the shower just before Princess's alarm starts going off, she will get out of bed faster than she ever has to come galloping in to make sure I don't use all the hot water, how long am I going to take, why couldn't I wait, etc. etc. and that is just too much fun for me to resist. 

Birthdays, Anniversaries, and Architechture

Today is my little dog's birthday. A day of great joy and celebrating in my house. A celebration of 3 years of love, joy, and happiness! (Because it is his birthday, we are going to ignore some of his more irritating habits, like not waking me up at night when something is knocking on his back door. Love those morning surprises.) He has an under bite that makes his bottom lip stick out and I swear he dangles it in front of me hoping I will trip on it and cover him with kisses, all while pretending to want to get away from my loving embrace. I think he is just trying to save face in front of the other dog, that is why he runs away from the kiss storm as soon as he can wriggle away from me, but he has a head that is as soft as a velvet painting of Jesus and I cannot resist trying to cover it with layers of kissies. The other day I came home to find that my dogs had ransacked my potatoes. There were 4 of them scattered around the house. One in the living room, one in the kitchen and two in my bed. I threw away two of them and let them keep the other two because they were enjoying them so much (and had eaten half of them). They kept bringing them into bed with us and I kept pitching them back out. We kept up this charade until I gave up, as they knew I would, and I went to sleep with 2 dogs, 2 potatoes, one rope toy, 2 books, my 2 remotes, and me all sardine-canned in to a full sized bed. I should be embarrassed by how much I spoil my dogs, and I am a little, but I love those little sh*ts so much and I have never been a good disciplinarian. I set his birthday on the 5th on purpose, because I wanted something positive the day after something negative, which is the anniversary of my being diagnosed with MS.

Eight years ago yesterday I got the news that I got the MS from sitting on an infected toilet seat, probably at a store somewhere. I really should use those paper seat covers, but I didn't think I would ever contract anything. How naive I was, putting my bare arse all over toilet seats wherever I went, never for one moment stopping to think of the possible consequences! Nah, I just had to give the public what they want, a reason to treat me as a person with a communicable disease. The thing about having MS for this long is getting over having MS at all, whether that is good or bad, I leave to each person to decide for themselves. I'm not saying I don't hate it or get frustrated by it, but I no longer rage and shake my fist at my crappy immune system. In fact, I am not even doing any of the DMDs anymore. I remember in the early days after being diagnosed, whenever I heard of someone willingly not doing any of the DMDs, I thought they must be crazy. I never thought I would be one of those who stopped clutching my sheets with sweaty palms at night, worrying about not having that 30% (more or less) reduction in disease activity or whatever, but here I am not caring. I was getting so bad about giving myself my shot that I only did it once or twice a week, just to be able to show my family an itchy red welt to prove I still was doing my shot, kind of. I talked to my neurologist about it, we tested me for the virus (is it JCV, JVC?) that excludes you from taking Tysabri. I tested positive (good thing I quit doing Tysabri) so that was out, and she and I agreed to stop with the facade of doing Copaxone because there is no benefit to taking it so little, and just waiting for some of these new meds to make their ways down the pipeline. Now I have 3 months of Copaxone chilling out in my fridge, waiting for a good home. I would like to find someone who is really struggling with being able to afford it to give it to. It is house broken, crate trained, and ready to cuddle with its forever family. If interested, contact Blindbeard at Blindbeard's MS Medicine Rescue.

Lastly, I have a few words to say about architecture. The other day Princess asked me how it feels to play the same game that little kids play. She was talking about my enjoyment of Angry Birds. Yes, it may seem like a game for little kids, but that is only if you look strictly at the graphics. Those damn egg stealing pigs are architectural geniuses! Their structures are marvels of engineering! If we could build stuff as ridiculously strong and stable as they do, no tornado or hurricane could ever destroy any home or building, EVER! There is more to the game than just flinging birds at those irritating, albeit very cute, pigs. It takes some finesse and figuring to bring down those structures. I get so angry at those pigs, I swear I'm going to have bacon for my next meal. Princess hates when I say that because it makes her hungry for bacon. I'm just hungry for revenge and my eggs back! The only complaint I have, other than their building skills, is how they get black eyes and lose teeth. It makes me feel bad, but then they smile when I don't beat the level and I swear I'm having bacon as soon as I finish that level and go to the store, or they give me my eggs back, whichever comes first.

Critique

As if I didn't suck enough, I now have cluster headaches. I don't know if I wrote about my eyeball pain last year when it started, but I sure didn't hold back around here. I have done all the scans, went through too much none-too-cheap medicines trying to treat a sinus infection that didn't exist, pondered the possibility that 3 times EVERY day at the same time someone took a sledgehammer to the left side of my face/head and for some reason I didn't notice them sneaking up on me, because we all know how much that happens, and finally when all those possibilities were ruled out, cluster headache was the only thing left. I figured it out by myself, because lets face it, the doctors most certainly weren't awake with me in the middle of the night trying to figure out how that person with a sledgehammer got me again. I was looking up how painful gout is and stumbled across a list of the worst pain people can have. Gout is on that list, that list that has as the number one most horrid pain cluster headaches with a description that was exactly what I was going through. Since they hit at the same 3 times every day, I prepare for them as well as one can. I take pain meds at night that make me fuzzy around the edges and make my reading comprehension so low that it is pointless for me to try reading, so I have been watching movies. I am finally getting around to all those movies that I have been meaning to watch for years (and years and years) but just never got around to. I'm trying to stick with classics and any suggestions you may have would be greatly appreciated. Here is my critique of a few.

The Godfather

I have been meaning to watch this movie for years but never wanted to take the time to do it. I don't do good with too long of movies because I get restless unless they are excellent movies. The Godfather, as I'm sure you know, IS excellent. I have watched it so many times, and even now am thinking about getting it from the library again today. My first book is going to be "Things I Would Do Sexually To A Young Al Pacino". And there would be sequels. Many, many sequels. When my eyes first clamped on to him, my pants burst into flames and every time I see young him again my pants burn up. Too bad that I wasn't even born yet when that movie was made. Such a damn good movie and such a damn hot man. That is the definition of win-win right there!

Seven Brides For Seven Brothers

Have you seen this movie? It is so ridiculous yet so much fun and the songs get stuck in my head. Even talking about it I get, "Bless yore beautiful hide, wherever you may beeeee!" playing in my head. I have watched is several times and have enjoyed it each time, damn it! It amuses me that women back when that movie was made sang at such a high pitch. One minute they are talking in a normal voice, then the next they break out in a song in a pitch that can shatter glass.

Some Like It Hot

I LOVE LOVE LOVE this movie! I am going to have to buy it because I have renewed it from the library 3 times and that is the limit. Jack Lemmon as a woman is so friggin' hilarious, and how can you not love Marilyn Monroe in it? She is so cute and I love how she has curves, she's not built like a 12 year old boy like women in movies are now. The pointy boobs are really pointy and you can tell it's a different time by how the men pat the women on the butt and the comments they make that would get them in trouble these days. When Jack Lemmon gets engaged to that man is my favorite part and I have watched it and laughed at it over and over again.

I have more that I will add later, and, like I said above, I am open to any suggestions. There are a few that I really want to mention but I don't want to not give them the full paragraph that they deserve. (If there is anyone who is interested, I can talk more about my cluster headaches, or if you want to tell me about yours, that would be great too. I would love to hear how you deal with it.)

Happy Birthday To Sugarbowl

The main reason that I have not been blogging is because I feel like so much time has passed that I need to bring myself (and any readers I may still have) up to date. Honestly, the idea of having to bring myself up to date makes me want to go to bed with a hot toddy and an ice pack for my head. Not that there is one thing of any real interest, my divorce was finalized in July, I'm still a gimp, my sciatica is still a hot knife stabbing my right butt cheek/lower back, and yet I still feel like I should deal with these issues before moving on to new ones. But in honor of Sugarbowl's birthday, and my deciding to just start from where I am and pretend that I slipped into a coma for the last few months and just woke up from it, I am going to act like we were just talking yesterday, and here is what's going on today.

So, Sugarbowl is 34 today and you would think that 34 is the most ancient age ever, that we would have to saw Sugarbowl in half and count her rings to ascertain her age, then do some carbon dating just to be sure. Maybe if she and I were not 4.5 years apart, I may have an iota of sympathy, but I don't. To a woman who is 4.5 years older, I can't bring myself to cry into my pillow over her hitting the big 3-4. She and I both had to have our driver's licenses renewed this year. Why is it so hard to take a decent picture for those things? Do they do it on purpose so that you don't want to get pulled over and have to show that picture to ANYONE UNDER ANY CIRCUMSTANCES, thereby making you are a law abiding citizen? Since she and I both had to go through that hideous event this year, we have been debating whose picture is worse. Spoiler alert: Mine is. But let us start with hers.

Hers

Imagine if you will, a round, white face framed by about 14 chins, a luxurious blond comb-over-looking hair don't, and a look on the face like they just ate a stink bug. They didn't just, "GULP! I swallowed a stink bug!" They chewed that thing 20+ times and savored every bite, then CLICK! here's your driver's license that you get to carry for the next 5 years! She called me and said she wanted to cry and that she would pay me $100 if I could honestly say that mine is worse. (She refuses to accept my arguments regardless of the evidence staring her beady eyeball to beady eyeball, and steadfastly claims hers is worse. She still owes me $100.)

Mine

I would like to pretend that I don't have a driver's license instead of admit that that is supposed to be me. What a sick joke! And the lady had the nerve to lie TO MY FACE and say that it turned out pretty good. I don't even want to think about what I must have looked like to her in person for her to open her mouth and fart out such a lie. But I digress. In my picture my hair is a curly mess that is flat on one side and caught in a wind tunnel on the other. My face looks tired and old, like I spent the last 38 years servicing men in a back alley for crack money. But all of this is nothing compared to my skinny, stingy, dried up old turkey leg of a neck. What was I craning my neck for? Did I want to see how long and stringy I could make it look? It's so horrible that I keep it covered at all times and  live in fear of someone needing to see it.

Even though it is her birthday and I should give her this day to have the worst driver's license, I can't honestly say that hers is worse. I'm going to go over to her house and clean, but I cannot lie and say that 14 chins are worse than stingy, dried up turkey leg necks. It's a toss up at best. There are no winners in these situations. Only losers, and there are 2 victims of the DMV right here.